Version in German

^{(Ein wichtiger Hinweis: Ich bin medizinischer Laie. Ich habe nur lange mit meiner Krankheit gelebt. Ich kann alles medizinische hier falsch verstanden oder falsch wiedergegeben haben. Jede in diesem Text wiedergegebene Information ist potentiell aus dem Zusammenhang gerissen, falsch, unvollständig. Hört auf Euren Arzt! Fehler sind meine Fehler, nicht die meiner Ärzte.Meine Erfahrungen sind anekdotisch. Eure Erfahrungen können anders sein.)}

I’m now back in August 2025. Everything I’ve written before is the story of how I came to that letter. That letter which said: “Presentation in cardiac surgery recommended.” A letter that accelerated a great deal of what had already been occupying me beforehand.

This chapter came about partly during that period. You’ll be able to tell from the text that the thoughts are somewhat morbid, somewhat gloomier. It was the time before the operation. When all my thoughts somehow concentrated on the operation. And on the thoughts of what would happen if something went wrong.

It’s time

After I’d digested this letter, I first of all called my cardiologist. “I need an appointment. My aneurysm is ready. I’d like to talk to the doc about an operation.” I put it differently, but that was the essence of the conversation. I then got an appointment very quickly. Perhaps, again, a sign that this diagnosis is to be taken seriously. When you put the word aneurysm in your mouth, things suddenly go considerably faster.

In this appointment I agreed with my cardiologist that I would now really tackle the operation. How did he put it: “We have to see about getting you onto the safe side.” And that’s exactly where I wanted to go, too. To finally be safe again.

And the process started up once more: first came the pre-operative diagnostics, which I already knew a little from the last time. I didn’t have to do a transoesophageal echo again. Why, I don’t really know exactly.

Instead I had my second cardiac catheterisation. Here, too, nothing worrying came out again. Heart fine. Aorta wrecked. I knew that, of course. After the catheterisation my cardiologist said to me: “We’re an old team by now, aren’t we.” Six, almost seven years now. December 2018 to today. I trust him. I had my seventh or eighth cardiac MRI. I don’t know how many ultrasound examinations. My cardiologist isn’t much older than I am. I think this “team” has a few years left in it. I think that after my retirement I’ll have to look for a new cardiologist. But then, my plan was also to move to Fehmarn as a pensioner. And then a cardiologist in Lüneburg is just a little impractical. Although: Lüneburg is lovely. I could still drive there occasionally. Ultrasound in the morning, coffee in the afternoon.

During that period of the cardiac catheterisation, all the doctors I had to consult had students with them. Or, to be more precise: female students. They really were only female future doctors. They must have been universal placement weeks. Even at my GP’s there was a student sitting in the room. By the time the thought came to me that I should tell her that, if she wanted to learn only one thing from my GP, she should copy the way she deals with patients, my GP was already back in the consulting room. And that was then too embarrassing for me after all, even though it was actually important to me.

Another student watched the cardiac catheterisation in the hospital. At the end I said: “I hope it was illuminating.” It apparently was. In any case I was, presumably because of the sedative they’d given me in the course of the cardiac catheterisation, once again particularly talkative.

For me (and my doctor) it was illuminating in so far as that I learned once again that my heart was perfectly fine and that I could concentrate on the next step. It was, again, the expected result.

I then organised the appointment for the operation myself with the clinic. From my first attempt I still knew whom I had to write to for it. I wanted to get it behind me as quickly as possible.

5 percent

An operation is, first of all, per se a bodily injury, so the doctors have you sign a “get out of jail” card. This card is, somewhat more professionally, called a consent form. “I’ve told you what we’re going to do. I’ve told you what can happen. Will you go with me? Into the operating theatre, that is.” Yes or no. Maybe isn’t allowed. Because then you just stay outside, exactly as with a “no.”

Any procedure is always a risk. There is no risk-free operation. I remember waiting some years ago in a car park in Hannover until the agreed time for a professional appointment had come. Contrary to expectations, I’d arrived in Hannover much too early.

A radio programme I listened to while waiting was about outpatient operations that hadn’t turned out so well and their consequences. Operations where I actually thought: “Okay, doesn’t sound thaaat dramatic now.” But people had nevertheless come out of these operations severely disabled or dead. Partly because of mistakes, but partly also because of damned bad luck.

So if there’s no risk-free operation, a very obvious question arises in your head when you yourself are facing an operation: what actually is my personal risk for my walk to the surgeon?

I’d faced this question already in 2019, and this year too I again researched my way right across the internet to find some reassuring words. I researched the state of the studies. I went on every risk calculator I could find.

So what was the risk of my operation? The literature says: roughly 5% in general terms. Five out of 100 people are no longer among us 30 days after the operation. Ouch. That sounds like a lot.

And it is, when with many operations we think: “Yeah, it’s unpleasant, but you’ll survive it.” But to reassure yourself at least a little: this figure includes the entire patient population. Including the multimorbid people who have all sorts of other problems on top. Who carry around a very large risk portfolio with them. That pulls the risk up considerably.

My risk was considerably lower, if I could believe all the calculators. EuroSCORE II said 0.96%. A recently published American calculator for aortic operations said roughly 0.5%. Out of 200, one doesn’t come out of the OR alive. Sounds a bit better. But not super-reassuring either. Enough “not good” to worry about.

But to put it into context: a caesarean section has, all in all, a risk of about 0.04%. Ten caesareans, then, is one aortic operation on Jörg. On the basis of these numbers I find it astonishing that women without medical indication decide on one. Not wrong, just astonishing. Because, as it’s correctly put: everyone makes their own decision about their own body. And a normal birth is itself risky enough.

An appendix had a mortality of 0.12% in 2017; if it gets complicated, that became 3.2%. One might think: well, then 0.5% isn’t so bad after all. Maybe not. But 0.5% is my risk. 0.12% is the risk of everyone. Including those cases that don’t have a good starting point.

My personal risk of dying from a caesarean section is 0%. Obviously. My personal risk of not coming out of the OR alive after an uncomplicated appendix operation is, however, likewise practically 0% in my case.

So there is, after all, a certain difference between an appendix and an aortic operation, even if statistically the operations sound closer than they are when you compare the operations across the entire patient population.

Or when, in order to reassure yourself, you misuse the statistics and compare values with one another that aren’t comparable. The overall risk of a population against my personal risk. Although it was completely clear to me what I was doing there, it even helped for a while. Fooling yourself can be an effective sedative.

I studied the risk calculators in the hope of gaining certainty from them. Which I managed to a certain extent. 0.5% sounds considerably more survivable than 5%. But 0.5% is still enough to do plenty of worrying. And I did do that. Very plentifully.

However, calculators have the potential to move your state of mind in both directions. You can make yourself very nervous with these calculators. They’re also made more for doctors, to estimate whether an operation is worth the risk. If the mortality of an operation is 20%, then I don’t perform an operation if the mortality risk of the unoperated disease is considerably lower. They’re not intended for the layman who’s nervous before an operation. So perhaps the recommendation here has to be precisely not to occupy yourself with these tools. You probably need a doctor who puts these numbers into context.

Chance

Why, in such operations, do problems suddenly arise even in the healthiest of people that make the operation turn out catastrophically? My guess as a layman: because chance and the tiniest of side conditions always play into it too.

There are apparently plenty of connections that aren’t really clear to you, so that decisions from the past suddenly take on significance for the present.

There’s a good reason why you have to pile many years of specialist training on top of your degree. Wading your way through scholar.google.com doesn’t replace that. And it’s precisely these little things, I believe. And yet there are so many people who think that after a bit of research online they know more than doctors.

Little things

It’s apparently little things that turn routine into a problem. I’d like to tell a story from my own past about this, one that suddenly had effects on the present:

Today I’m glad not to have had a small, outpatient operation in October/November 2022. By now I know that there would have been a very strange, rather unpleasant interaction with the big aortic operation. Right up to anaphylactic shock on the operating table during the big operation. Not necessarily, but possibly.

As a layman, you also have to come up with the connection between the antagonising of heparin – which was absolutely necessary for the big operation – and the small operation in the first place. I got plenty of heparin during the operation, and within the framework of the operation that had to be antagonised, too. The blood has to be able to clot again, after all.

And that’s what I mean by context, which ultimately determines the risk profile.

To say that I’d cancelled the small operation back then for that reason would be a dishonest retroactive rewriting of history. I simply didn’t know that at the time. Nobody told me, either. Probably only a few doctors even know it.

My doctor couldn’t tell me at the time, because I didn’t tell him about the aortic aneurysm. For a 15-minute operation under local anaesthetic I simply considered it irrelevant. I also didn’t let the dentist know that I have an aneurysm.

And here we come, perhaps, to the next tip from me to the gentle reader: there is nothing that is unimportant in the conversation with your doctor. And let your doctor decide what’s relevant. That applies also and especially to illnesses or things that may be unpleasant for you. I suspect that a doctor with a bit of professional experience very rarely has a situation in which he or she thinks: “Ewww, I’ve never heard that before.” So you might as well tell him or her everything right away. Your life could depend on it. And you don’t want to show Dr. House yet again that he’s right with his dogma “Everybody lies.”

There are ways to circumvent the aforementioned problem that would have arisen after this small operation. You can prepare the treatment for it. You just have to tell the doctor. It would have made everything a little more complicated in a situation where you want to have as little “complicated” as possible. Where you want everything to proceed firmly according to standard, according to guidelines.

To give truth its due: it was an amalgam of many reasons why I forwent the small operation. But: had I known what I learned shortly before the big operation about the interaction, I probably wouldn’t have contemplated the small operation at all back then. Because the big operation lay unavoidably in my future. I’d known that since 2018.

I am, as I said, glad today not to have had it done. I still don’t understand all the connections even now, but I would at least have gone into the anaesthetic with considerably greater uncertainty had I had the small operation done beforehand.

Indeterminacy

So you sit, waiting for the day of the operation to come, in front of the computer and drive yourself crazy with all kinds of data. So much goes through your head. And many of the thoughts are really strange. Many very morbid.

It took me some time to work out what made the situation so strange. But at some point the 0.5-watt enlightenment light came: the disease I had produces no real physical pressure of suffering. You feel fine. It’s not as if the appendix might burst, the pain of the slipped disc might drive you mad or a tumour keeps growing and growing. Or that my heart or my valves are barely able to carry me through the world.

And yet you are chronically ill. You are highly functional chronically ill. That classic “I have an illness you can’t see” (something many people know) is extended by an “I have an illness I can’t feel physically.” And which can nevertheless be fatal.

You then at some point decide, out of this state which from a physical point of view doesn’t differ all that much (or at all) from normality, to undergo a procedure. Because reason dictates it.

You nevertheless think: “Why not just carry on like this, actually? It’s gone fine up to now, too … I feel fine, too.” I know of people who handle it exactly that way. Who don’t have the operation. I feel fine, after all. As I say, that’s what makes this disease so insidious.

I’ve also read that some people – especially older people who are aware of the surgical risk – think that a burst aneurysm would help them to a swift death. And that this is to be preferred to a prolonged decline that can result from other diseases. Or to a decline through a complication of the operation. I find the standpoint interesting and understandable. But I probably don’t yet have the age to take this standpoint myself. Even if it makes me think of my grandmother’s saying that growing old is nothing for scaredy-cats.

I want to get at something else, however. I believe the strange thing about this situation is the following: the day on which an aneurysm ruptures is indeterminate. The day on which you die is indeterminate. With the decision in favour of a major operation, you determine this day with a certain probability. With a probability of 0.5–1%, for me that was a day at the end of September 2025. And that doesn’t even include all the non-fatal complications in the calculation, stroke for example. You very consciously take on a life-changing, perhaps life-ending risk.

You determine, through your own will, something that is indeterminate, that should remain indeterminate. Admittedly only with a certain probability, but in doing so you yourself place the weight of your will on the scales through the decision.

There are other diseases that make it clear to you that the remaining days in the world won’t require particularly many pages in diaries. That, too, takes the indeterminacy out of the situation to a certain degree. But in a completely different way. It’s unavoidable, non-negotiable and, above all, not subject to your own free decision.

It’s something we can’t steer. A cell degenerates somewhere in the body and starts a process that we aren’t always able to halt. And to which we more or less have to subordinate ourselves, to the chance of it happening to us.

But in the case of the elective aneurysm operation it’s different. It’s an operation based on rational decisions. It’s an investment in a future. Taking on a risk in order to exclude another risk. While the head tells us it’s reasonable to have the operation if the risk of the aneurysm is higher than that of the operation, the fear in the head doesn’t want to hear a word of it, sticks its fingers in its ears and drowns out the brain with strange thoughts.

The risk of rupture is invisible. I don’t have to decide anything for it. It’s there. You get used to it. The risk of an operation takes its beginning in a decision. Precisely that decision to carry out the operation.

How you deal with it has, I believe, a lot to do with your own personality. I approach this decision with statistics, with science, with even more rationality. I read a great deal, almost too much, about the operation.

By the end of September, my relatives had by now developed the fear that I would wake up during the operation and just say: “But what you’re doing there isn’t actually covered by the state of the studies in that form …,” only to disappear right afterwards back into the artificial coma of the anaesthetic, leaving behind a shocked anaesthetist and a speechless surgeon. To “laymansplain” to the doctors what they should and shouldn’t do. I would never have done that. I know better than to explain their job to experts in their field. I myself raise my eyebrows a little when someone does that in the area of my expertise. And do not do unto others what you would not have them do unto you.

There are so many questions haunting your head: why is it a good decision? Why is it a right decision? Is it worth the risk? I could say it for myself: yes, it’s worth it to me. The Jörg of 2018 to 2025 cost me quite a bit. I went into it with the thought that I want the Jörg from before 2018 back. Only with less weight, perhaps.

Unfortunately I couldn’t keep up the Jörg from before 2018 permanently in the period from 2018 to 2025. I tried. Even though I exerted myself greatly. But living in exertion, in tension, isn’t a state that can be kept up in the long run.

The question is how you, perhaps not take away the voice of fear, but get it sufficiently under control that, in the choir of voices in your head, it has an equal role to voices like hope, like courage. No longer dominates the choir of emotions.

Evolution gave us consciousness and will, to take our own fate into our hands and shape it. And I’m firmly of the opinion that it’s our right and our duty to do precisely that. But that’s why the whole situation doesn’t feel any less strange when you’re waiting for the day on which you’ll be operated on.

No one takes the fear from you

In this situation you won’t hear from any doctor: “Don’t worry.” Doctors are very aware of what risk the operation to remove an aneurysm entails. Even those who work in a completely different specialist field. Somehow everyone knows that this is serious.

There are always probabilities in play. That’s why no doctor says these words either. Only that you have the very best preconditions. That you’re still young. That it would be unlikely for something catastrophic to happen. But no doctor is able to give certainty, because there’s no certainty here.

I was only annoyed about one thing: in the weeks before the operation I went to all sorts of preventive examinations. I wanted to know whether I had any other problem before I committed to the operation. Because repairing the aorta presumably makes little sense if you have a more urgent, different building site in your body.

I told each of these doctors that this operation lay ahead of me. Far too often I was sent off with a “Good luck.” Professionally I’m a big fan of that saying which James Cameron puts in the mouth of the character Lindsey Brigman in The Abyss: “Luck is not a factor.” The job of doctors is to heal. That’s why I always hope that luck is not a factor in the profession either.

I’m also aware that there is sometimes luck in play. Although I consider luck to be a paraphrase for an unknown factor that isn’t known but had influence. Luck is a human construct. Not a scientific one. A lottery win doesn’t consist of the luck of having ticked the right numbers, but of the chance that you chose the right numbers on your lottery ticket.

Luck is a human construct grafted onto chance, in order to evaluate chance. Luck is chance that improves life, bad luck is chance that leaves wishes unfulfilled. Of course chance has no influence when you’ve achieved something, when something is successful. But when you’ve messed something up, really profoundly, then it was bad luck.

It’s just that I don’t want to hear anything before the operation, of all times, that suggests luck and therefore chance is a factor. Especially when you’re convinced that luck is rather a rare guest in these parts.

The saying by James Cameron (it’s attributed to him, at least; who first said something is sometimes a little hard to find out) is, incidentally, actually longer:

Luck is not a factor. Hope is not a strategy. Fear is not an option.

I’d extend it further with “Failure is not an option,” a sentence that was put in the mouth of Gene Kranz, played by Ed Harris. Kranz later adopted it for his magnificent book.

I like this statement. One should perhaps strive for it. At work, but also in private. Fear is not an option for living with an illness. Hope that it won’t happen, just as little as the hope that everything will turn out the way you wish without a fight. No matter what you plan for yourself. It shouldn’t be luck that the illness doesn’t turn into a catastrophe. But you shouldn’t be too disappointed if everything turns out differently, because luck, hope, fear and failure are inseparable parts of life.

These combined fortune-cookie wisdoms I imagined as a mantra for the doctors. And probably it’s also the mantra of surgeons, who know exactly that they hold the life of the person they currently have on the table there in their hands.

That other doctors then wished me “Good luck” felt wrong. It sounds like “break a leg” from the orthopaedist. I know they only meant it kindly. But still. “Every success” I might have preferred to hear.

Psyche

I wrote that this disease is insidious. Just because you can’t see the disease, just because I don’t feel it physically, doesn’t mean that the disease doesn’t change you. It’s these changes that turn you into a different person. And these are many little things that you only notice once you put yourself, for other reasons, under the mental microscope of self-reflection, of looking back at the past.

It’s inevitable that at some point self-examination concentrates on how you were before and after an important moment in your own biography. Differences are easier to recognise than explanations. For example before and after the diagnosis. The view through this microscope is a strict one, and you shouldn’t be all too surprised if you don’t come off well in it at first.

By that point at the latest, you should also turn your gaze to those things that were wonderful, that were good. In the last six years I’ve got to know wonderful people, people whose lives write a book that’s worth reading. Learned things that have moved me forward as a person. If you don’t do that, the reflection becomes a lesson in depression. And that’s definitely not where you want to go, especially in this situation. Because that’s more or less just “tearing yourself down.” Believe me …

It’s just not the case that you simply no longer lift anything heavy. The disease and the restrictions resulting from it become part of your own personality. The worries when something feels strange. May I do something? Do I want something? Can I do something? Everything new is viewed from this angle.

I noticed that the thoughts dancing like a cork in the whirlpool became more and more frequent. That’s only hard to bear for other people, and I understand that.

And after more than six years I no longer wanted any of that. Because it’s strenuous. Because it came with personal costs that I was no longer prepared to pay.

Seen from this perspective, it’s not only the body that was to be repaired through the operation, but also the soul. I know that at some point, in self-examination, I’ll ask myself how the Jörg before and after the operation will differ.

I don’t want to anticipate the next parts yet, since, to understand my conjectures in this regard, the events around the operation are important. But I believe that there, too, the difference will be considerable. I have reason to assume that it will be okay. I’d gladly have done without this further kick up the backside in the form of the operation. But it was – I think – just as necessary as the first.

In tomorrow’s text I’m in the immediate days before the operation and describe how crosses on a form suddenly became existential, profound questions and how I completely underestimated this form.